Let me tell you a little bit about this small, yet significant part of me.
Whatever challenge I find myself, I have learned something so simple yet so difficult. I have learned to ALWAYS remain grateful. Gratitude is everything. My ‘gratitude-maturity’ is not yet where I aspire to be, but it is working progress..
Living with an incurable (and debilitating) disease is hard enough but top it up with life’s daily challenges (which we all have)- it gets horribly exhausting sometimes.
Some of us are healthy and well. Great! Many others have to live up to the fact that their heart diseases, respiratory problems, cancers, endometriosis, learning disorders, blood and genetic disorders such as mine may never be cured.
But we live. Sometimes we don’t. Other times, sadly, some don’t make it.
Quality of life (QoL) is everything.
QoL is my wellbeing, my family, the health system, my employer, my communities, my society. I have a fantastic quality of life, truly. But QoL is not only about what they all give me, it is also about what I give back.
However, I always talk about ‘mind over matter’. Gratitude. A healthy consciousness. Sharing with others. Looking past one’s self. Focusing on others… These are the simple yet powerful aspects of life that have improved the quality of my health, my being.
There is no cure for sickle cell partly because it is still seen as a rare disease that affects a small majority of the global population, which I completely disagree with by the way. But more importantly, because it’s a genetic disorder and we know it’s nearly scientifically impossible to cure flawed genes. It’s been many years since Western medicine evolved. It’s also been over a 100 years since sickle was first discovered from the Islands of Grenada and today there are millions of people living with this disease globally and people still talk about it being a rare disease?
There are currently only 4 ways to manage sickle in western medicine: (not alternative medicine or nutrition)
- Bone marrow transplant- only recommended for kids under 6. High risk!
- Hydroxycarbamide – originally formulated to treat Leukaemia- now recommended for sickle.
- This http://www.telegraph.co.uk/news/science/science-news/12179801/Life-changing-Sickle-Cell-Disease-treatment-approved-by-NHS-watchdog.html – the blood exchange which is now automated and has been recently approved by the health watchdogs.
- Pain management consisting of some really crazy narcotics/opioids
A double whammy really. These manage our sickle but leave us with potential side effects.
We are left with little or no options.
But I cannot cry over things I have no control over. It is stupidity in its entirety.
I cannot control the fact that there is no cure for this- as people living with cancers, heart diseases, endometriosis, pulmonary conditions etc. We are all in it together.
But I can say ‘thank you’ daily. Because I am left with the star quality of care and support I receive from:
- My phenomenal doctors and nurses at the Homerton hospital
- These great clinicians at Guys & St Thomas, UCL, Great Ormond St researching into all these amazing therapies that may eventually pave way to a potential cure for this disease.
- The UK Sickle Cell Society staff who support me and open doors of opportunities for me to touch lives and spread the message through being a part of the charity.
- The National Institute for Clinical Excellence (NICE) for approving this treatment to support the 15000 people in the UK living with this and putting clinical standards in place that pave for clinical quality in our care.
- My GPs (even though I barely see them) LOL
- The Paramedics who convey me to hospital and make me feel so comfortable even when I feel guilty for being sick and ringing them.
- The entire National Health Service that looks after my retina, my lungs, my red cells, my chest, my pain, my head, my sexual health, my mental health, everything.
- My Church – for teaching me and reminding me of the morals of being good and keeping faith in God even when I lose it all – sometimes.
- The Kabballah centre – who teach me not to have the desire to receive for self alone and share love and light but most importantly have built my spiritual maturity.
- My family and loved ones who continuously show me unconditional love and care when my body is going through its ‘thing’ and is unable to function at its best on some days.
- My partner who loves me accepts me as I am and does it all
- Me – for believing in my own strength
No, Genuine gratitude has to be the ultimate reason to be here…